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Old 01-01-2004, 03:17 AM   #1
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being referred to infectious dieseas specialist...lots of questions

My internist has run a lot of test the past 3 weeks to try and determine why my temp continues to be so high. All of the test he has done came back normal. He is now referring me to an infectious disease specialist. I am nervous and scared. Can anyone give me an idea of what the appointment will be like, what tests he will run, what will he be looking for? I apologize if I sound ignorant.....I have never been to an infectious disease specialst and am trying to find out what to expect.

Thank you for any help you can provide

 
Old 01-01-2004, 08:22 AM   #2
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Re: being referred to infectious dieseas specialist...lots of questions

Hey there! No need to apologize. It's very good that you're curious about what is going to happen. The infectious disease specialist, if anything, will do most of his work by taking a thorough history. He will ask you a ton of questions about where you've been, what kinds of symptoms you're having, what kinds of drugs you've been on etc. etc. etc. Then, the most invasive thing he'll probably do is take some body fluid samples, most probably only blood.....if he has any real suspicion that you might have some other infection, he may take other fluids, but it's unlikely.

You have what they call in medicine fever of unknown origin (FUO), so what the infectious disease specialist will also do is tailor his tests towards the kinds of things that FUO often ends up being caused by. The two most common things are tuberculosis and subacute bacterial endocarditis (SBE) (i.e. infection of a heart valve, or the inside of one of the heart chambers). There are other things as well and he will investigate for those too.

I'm not sure if you're the same person who posted in another thread about this same thing, but I asked some questions that are often asked to see if someone is at risk of having SBE. Have you at any recent juncture:

have a history of IV drug use
gotten tattoos
had dental surgery
had vascular surgery
had heart valve disease (notably aortic stenosis)
have problems with your immune system

 
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Old 01-01-2004, 10:09 AM   #3
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Re: being referred to infectious dieseas specialist...lots of questions

Quote:
Originally Posted by MicheleReneeV
My internist has run a lot of test the past 3 weeks to try and determine why my temp continues to be so high. All of the test he has done came back normal. He is now referring me to an infectious disease specialist. I am nervous and scared. Can anyone give me an idea of what the appointment will be like, what tests he will run, what will he be looking for? I apologize if I sound ignorant.....I have never been to an infectious disease specialst and am trying to find out what to expect.

Thank you for any help you can provide

having an elavated temp does not necessarily mean you have and infection. If you have enlarged lymph nodes, the doctor would do a biopsy on the node and all types of cultures would be done plus cancer should be ruled out.

brucd

 
Old 01-01-2004, 10:18 AM   #4
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Re: being referred to infectious dieseas specialist...lots of questions

Bruce makes a very good point. Other things that can cause fevers as he's put are cancers (especially hematologic ones), collagen vascular diseases (lupus, rheumatoid arthritis, sjogren's, etc.), certain endocrine abnormalities (esp. hyperthyroidism), certain medications etc.

I think the thing with fevers though, if there is one, you have to rule out an infection first before you start going to the other causes--an infectious disease specialist or any other internist is a great start

 
Old 01-01-2004, 09:14 PM   #5
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Re: being referred to infectious dieseas specialist...lots of questions

I appreciate all the replies and information. Yes, butterflytrans I am the same one the posted under another subject that you replied to. I really value the information that has been provided to me.

What types of cancer could be causing this?
It was mentioned the infectious disease specialist my do more blood work and take other fluids...what kind? I just hope not a spinal tap! I had one done years ago when a doctor wanted to test my spinal fluid. That was the biggest needle I have ever seen! And..needles don't usually bother me!

Thanks again for yalls help. I really appreciate it!

 
Old 01-01-2004, 09:57 PM   #6
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Re: being referred to infectious dieseas specialist...lots of questions

Quote:
What types of cancer could be causing this?
Any cancer can cause a fever, but the ones that are the most notorious for doing it are the blood/lymph cancers like the lymphomas and leukemias. But let's not jump to conclusions...this is a much less likely cause for a FUO.

As for what fluids he'll take....blood, yes...urine, maybe....but no...there's no need to take spinal fluid unless there is suspicion of meningitis, and considering you're healthy enough to be typing here right now, I'm pretty sure you don't have it!

 
Old 01-02-2004, 07:40 AM   #7
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Re: being referred to infectious dieseas specialist...lots of questions

one of the most likely causes is SBE (endocarditis), because i don't think you mentioned any other symptoms except the fever.

The mostly likely bacteria are the Viridans strep. i once culturred an Enterococcus faecalis from a patient having SBE.

The bacteria spill over into the bloodstream from the upper respiratory tract. If SBE is suspected, you might have as manyas four to five blood cultures drawn over a period of time.

It will take a combination of two antibiotics IV given over several days to treat this infection, because the bacteria lodge in your heart valves, however, this is all just a guess on my part.

bruce

 
Old 01-02-2004, 11:12 AM   #8
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Re: being referred to infectious dieseas specialist...lots of questions

Just wanted to try and put your mind at rest. The replies to your post are completely correct, just as I was reading them I thought that if I was you I would be quite terrified by now!

Just remember that the most simple things are the most common and the most easily treated, so try not to worry too much. I hope your appointment goes well. The ID specialist will most probably take a blood test for CRP, which is an indicator protein in the blood that increases when infection is present. You may have already had this, I don't know, but good luck anyway.
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Old 01-04-2004, 12:36 PM   #9
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Re: being referred to infectious dieseas specialist...lots of questions

Quote:
Originally Posted by Bruce
one of the most likely causes is SBE (endocarditis), because i don't think you mentioned any other symptoms except the fever.bruce
I mentioned my other symptoms in other post....but since you asked about them here....thought I would mention them again. Once again, I appreciate all of your help.

1- fever
2- headaches ( mostly when temp spikes)
3- fatigue (sleeping all the time...and I need to go back to work tomorrow!)
4- the past few days I have been retaining a lot of fluid. this is odd for me. I am trying to drink as much water as possible but its getting worse. not sure what that is all about....and it is not related to female monthly issues.
5- some disorientation....mostly when temp spikes....this is scary since I live alone!
6- my blood pressure and heart rate go up at times.
7- I forgot this one earlier....but at times...shortness of breath and pain breathing.

I should find out tomorrow when my appointment with the specialist is. I hope soon.

 
Old 01-04-2004, 04:40 PM   #10
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Re: being referred to infectious dieseas specialist...lots of questions

Quote:
Originally Posted by MicheleReneeV
I mentioned my other symptoms in other post....but since you asked about them here....thought I would mention them again. Once again, I appreciate all of your help.

1- fever
2- headaches ( mostly when temp spikes)
3- fatigue (sleeping all the time...and I need to go back to work tomorrow!)
4- the past few days I have been retaining a lot of fluid. this is odd for me. I am trying to drink as much water as possible but its getting worse. not sure what that is all about....and it is not related to female monthly issues.
5- some disorientation....mostly when temp spikes....this is scary since I live alone!
6- my blood pressure and heart rate go up at times.
7- I forgot this one earlier....but at times...shortness of breath and pain breathing.

I should find out tomorrow when my appointment with the specialist is. I hope soon.

You definitely need to see a good doctor, and i wouldn't presume to diagnose you. Headaches with a fever could be something serious. In addition, your fatigue plus edema, shortness of breath, and pain trouble me.

I don't mean to scare you, but if your symptoms get worse, i would suggest you go to a hospital ER right away. Prompt treatment could save your life.

take care, bruce

 
Old 01-04-2004, 08:45 PM   #11
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Re: being referred to infectious dieseas specialist...lots of questions

Quote:
Originally Posted by Bruce
You definitely need to see a good doctor, and i wouldn't presume to diagnose you. Headaches with a fever could be something serious. In addition, your fatigue plus edema, shortness of breath, and pain trouble me.

I don't mean to scare you, but if your symptoms get worse, i would suggest you go to a hospital ER right away. Prompt treatment could save your life.

take care, bruce
Thanks for your reply Bruce. I have been debating the ER all weekend. Especially with the edema seeming to come from nowhere. Also with the feeling at times that I just cant get enough oxygen. I have been trying to hold out until tomorrow to speak with my doctor.

My liver is something my internist has been watching closely since bloodwork after my last surgery showed elevated liver enzymes. He told me to stay away from tylenol as much as possible and if I needed to take it to not take more than 2 grams a day. He did tell me since I have been sick that I can take up to 4 grams to help with fever. I have been taking 4 grams a day for 3 weeks now to help with my temp....could the edema be related to anything with my liver.

Also, just fyi...i can't take asprin, ibuprophen or any nsaids because of gastritis. so, tylenol in moderation is my only over the counter option.

I have been drinking lots of water the past few days and my ankles, feet and stomach are still very bloated. I just hope something can be done soon.

 
Old 01-04-2004, 08:54 PM   #12
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Re: being referred to infectious dieseas specialist...lots of questions

Hey Miche! What's up?

Sorry to hear about your condition.

Tell me by bloated up, what do you mean? Are your ankles swollen, or your whole body?

Why are you drinking MORE water if you think you're swollen?

The shortness of breath, is it worse when you're doing something? Does it get worse when you like down?

Have you woken up at night short of breath?

....one more thing....how do you know that your blood pressure and heart rate go up and down during the day? Are you constantly measuring it?

Last edited by butterflytrans; 01-04-2004 at 08:54 PM.

 
Old 01-04-2004, 11:05 PM   #13
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Re: being referred to infectious dieseas specialist...lots of questions

Quote:
Originally Posted by butterflytrans
Hey Miche! What's up?

Sorry to hear about your condition.

Tell me by bloated up, what do you mean? Are your ankles swollen, or your whole body?
I first noticed my ankles and hands....but it is most of my body

Quote:
Why are you drinking MORE water if you think you're swollen?
I guess that doesn't make a lot of sense. I for some reason thought it might make me urinate more if I am retaining fluids....ok, so that doesn't make sense at all....

Quote:
The shortness of breath, is it worse when you're doing something? Does it get worse when you like down?
Both...but if I had to say one was worse it would be laying down and I am wheezing a lot when I lay down (i had chest xrays done a few weeks ago and they looked fine)

Quote:
Have you woken up at night short of breath?
yes, sweating...short of breath and a lot of pain breathing...it is not like sleep apnea symptoms though...I am not sure how to explain it...but, it is different

Quote:
....one more thing....how do you know that your blood pressure and heart rate go up and down during the day? Are you constantly measuring it?
No, I don't even have anything to monitor my blood pressure....I can usually tell if it gets real high or low and have felt like it has gotten high a few times. If I feel my heart racing then I do take my pulse....it was 135 a few minutes ago.

Last edited by MicheleReneeV; 01-04-2004 at 11:10 PM.

 
Old 01-05-2004, 05:38 AM   #14
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Re: being referred to infectious dieseas specialist...lots of questions

I forget how old you are Michele, but though your symptoms can be either of kidney, liver or heart origin, you usually want to consider them of heart origin until proven otherwise. I might want to get yourself to the doctor 'cause you will at least need an echocardiogram (even if a fairly recent one was normal).

 
Old 01-05-2004, 07:51 AM   #15
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Re: being referred to infectious dieseas specialist...lots of questions

Quote:
Originally Posted by MicheleReneeV
Thanks for your reply Bruce. I have been debating the ER all weekend. Especially with the edema seeming to come from nowhere. Also with the feeling at times that I just cant get enough oxygen. I have been trying to hold out until tomorrow to speak with my doctor.

My liver is something my internist has been watching closely since bloodwork after my last surgery showed elevated liver enzymes. He told me to stay away from tylenol as much as possible and if I needed to take it to not take more than 2 grams a day. He did tell me since I have been sick that I can take up to 4 grams to help with fever. I have been taking 4 grams a day for 3 weeks now to help with my temp....could the edema be related to anything with my liver.

Also, just fyi...i can't take asprin, ibuprophen or any nsaids because of gastritis. so, tylenol in moderation is my only over the counter option.

I have been drinking lots of water the past few days and my ankles, feet and stomach are still very bloated. I just hope something can be done soon.

I have had drug induced hepatitis (mega doses of niacin for reduction of cholesterol) and my goofy doctor recommended the niacin, but failed to tell me it would affect my liver. I was extremely tired and eventually my eyes were jaundiced.

I was off work for a month and was told my bilirubin was one of the highest the doctor had. It was over 30 mg and the normal is about one mg.

Some of the other symptoms are sore muscles, joint pasin, mild fever, loss of appetite. Edema is also a symptom.

The toxic level of tylenol is >150 mcg/ml.

I don't know if this is your problem, but i would not get carried away taking the tylenol.

Take care, bruce

 
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